Love, Joy and Pride

It was hard, it's been very difficult and it's been a struggle at times, but he's one of the happiest children you will ever meet, I think. Having gone through what he's gone through has enabled him to be a better person. He's, you know, he's a cracker little lad: he's considerate, he's compassionate, he's loving. And yeah, you can't help but fall in love with him - everyone does. INTERVIEW 70, Father

I get along very well with my daughter, I enjoy being together, and I enjoy playing games with her, and she's being silly as well. Like when we go to nursery - she's mastered uhm un undoing her car seat buckle and when I drop her off at nursery in the mornings, I kind of say - we park up and I say: "Right, well, I'm gonna get you out the car," and that's her signal to get herself out of the car. And then she climbs through to the front and then I have to go around, and "shock horror," she's not in the car seat! And uh every morning she finds this hilarious but it's just, it's something nice that we do together, to create a sort of, um, you know, funness with her, you know, between us and yeah, keep things kind of playful really. INTERVIEW 68, Father

She is a unique human being to my sense, and I've been so fortunate to have met my daughter, really. And as a human being, I've been, I think I'm even more fortunate uh for being a father. I've looked at life so closely, how… life is so uncertain, but life is also so loving when you love someone so unconditionally. Because I feel she loves me so unconditionally, there's no condition in her love, she just loves me. And as a child, sometimes I feel she's more mature than me, and as a parent, I've been given uh, so much! I've found so much joy in caring for her and nurturing and nurturing for her. And one of the really joyful sides of my daughter is that she's so, so humorous. Her sense of humour and my sense of humour really did we get along there. So, we make, we every day, we create lots of stories. INTERVIEW 15, Father

She's a joy, really, you know, she's handled everything amazingly well - it's been three years now, and you wouldn't really know she's had such, you know, a huge impact on her life. Probably when you say, you know, how do we cope, I've coped 'cause of my daughter, because she makes me happy and I feel like, you know, she's got, she got me through it - you know, the really difficult times. She's just yeah, she's this happy little girl: she's funny, she's hilarious, she's very sassy, she's very strong-willed. You know, she leaves an impression on everybody. Yeah, she just gets on with it really, she doesn't ever complain about things that impact her daily life, you know. She misses out on quite a few things, but she doesn't let it get her down, and she's always generally positive, so that's what keeps me positive. INTERVIEW 3, Mother

She is - I say, "A little ray of sunshine". We always call it "her magic smile" - when she smiles, and you can't help but smile back. I know it's a natural thing to do, you know, despite the lack of communication verbally, she totally makes up for it in other ways and literally lights up the room. The way she tries to engage with other people - yeah, her little smile and her little wave that she does to say hello to people, yeah, I think, I think she's quite infectious. And people aren't just being kind because, you know… because of her and her situation, and they're not just being kind to me - they genuinely love her. And everybody that we meet, you know, they just want to do what they can to make life happy for her, because she does genuinely make life happy for other people, because she's just such a happy-go-lucky, easy going, loving child. INTERVIEW 7, Mother

He is the only grandchild in the family - my parents have no other grandchildren and he's the only grandchild on the other side as well. And he um he just brings so much joy to his grandparents. He's just like a little… you know, we'd got used to living our lives the way our lives were and then he came along and it changed everything – but, for the good, you know. So, we, we haven't had a straightforward run of it particularly, because of the things that have happened over the course of his life, and because of the limitations that he has and the um… alternative tactics we have to come up with to deal with particular things. But uhm yeah, he's he is a lovely boy - 90% of the time he's a lovely boy. Yeah. We get along very well, me and him. Yeah, he's my little sidekick. INTERVIEW 36, Mother